Lupus rash

[Turquoise1999]

Hi,

I fairly new to this platform. I think it’s great to know how people are managing lupus and their experiences.

I have been diagnosed with lupus SLE since I was 11, I am now 22.

Since then I have experienced multiple rashes and flare ups. It started on my face and has spread to my arms and legs. I have some really bad rashes . These have left some scarring and dark marks, has anyone got any recommendations to helps this ??

Thanks !!

[Smudge4465]

Morning, on my experience it’s the methotrexate that helps keep the skin in check alongside the steroids. I have many scars on my body but thankfully non onmy face. I’m very blonde with pale skin so it’s not perhaps so noticeable. I’ve not really found any revolutionary fake tan or leg make up that works well. Sometimes we have to accept we are beautiful as we are🥰

[Turquoise1999 in reply to Smudge4465]

Thanks for replying

I’m currently on mychophenolate, hydroxycholroquine and steroids.

I guess so embracing it is the best way 🥰

[Lizard28]

I have been left with dark marks as well, I’m hoping it will fade but I use concealer on my face, my arms and top of my back are not so good, hoping it goes before the summer. Best wishes

[Turquoise1999 in reply to Lizard28]

It’s good to hear similar experiences. Hopefully they do fade.

All the best

[Krazykat26]

Hi Turquoise 🤗 welcome to the group 💐I have subacute cutaneous lupus (SCLE) which mainly affects my skin n I have had all kinds of rashes over the years (except the Malar rash).

R u seeing a dermatologist? If not I would suggest that u get a referral to dermatology.

Take photos n record symptoms so that u can start to see if there's anything that triggers the rash..makes it worse..or makes it better.

U don't say if you're on medication but for me I am on a regime that suits me now although it did take two years for me to get there!!

I take methotrexate, hydroxy, n prednisolone which has helped me greatly.

There's a website called DermnetNZ..it's very informative about different types of skin rashes n there's loads of photos so u can have a look n match the rash so to speak!! When I looked I discovered that although my rashes differ in appearance they r all typical SCLE!!

R u photosensitive? It's important that u protect yourself from UV rays if u are.

If it's itchy I take Piriton n I also use Dermol 500 lotion which is easy to apply n prescribed by my GP..n when I have open sores I have steroid ointments to put on.

I feel for u..rashes r so hard to manage n I'm sorry to hear that you're scarring..blooming skin is everywhere!! 😔🌈😽😽Xx

[Tiggywoos in reply to Krazykat26]

Beautifully put Krazykat26🥰. DermnetNZ really good and when I went to out of hours last year they used pics on there too 🤓. Take care . Always love your kind posts and replies xxx 💋

[Krazykat26 in reply to Tiggywoos]

Aww thank u Tiggy 🤗Have to say you've made me blush!! 😊And smile 😁 have a good day..n thanks again!! 🌈😽😽Xx

[Tiggywoos in reply to Krazykat26]

Any chance of a share of the pot of gold at the end of that 🌈😂? I’d love a lie down for about a year to sleep and be fed 🍉😂. You have lovely day too and thank goodness us 🐣 on this forum have each other xx

[Krazykat26 in reply to Tiggywoos]

Yes indeed 🤗 DermnetNZ was recommended to me by one of our lovely members..I looked up SCLE n realised my rashes were typical for my illness..I also discovered that methotrexate is the recommended immunosuppressant!! I was on ciclosporin at the time n it was making me really ill..so at my next appt I asked if I could try MTX..my dermy agreed n it has changed my life!! I now have some degree of control n my rashes aren't as severe!! I do hope that u discover that pot of gold!! 😉🌈😽😽Xx

[Turquoise1999 in reply to Krazykat26]

Hii Thank you

I haven’t seen a dermatologist, and I will certainly ask to see one.

Yeah I have been keeping records of rashes and where they mainly affect me. - and I think usually stress and sunlight triggers them which I try to avoid.

I’m currently on mychophnolate, steroids and hydroxycholoquine.

Yeah it is difficult but it is important to keep positive and hope for the best.

Thanks for the advice

Best wishes

[Tiggywoos]

Hi Turquoise1999🙂 Welcome to the group .. loads of fab information on here .

I’m not a dermatologist but previously I’ve been recommended Roche Posay products (hope that’s the right spelling) . They do a really big range of products for all different kinds of skin problems . As the others quite rightly say it’s a case of getting medication right but it does make us feel better if we something nice to use . I think vitamin C serums can help with scarring / pigmentation but you’d need to go steady and use just a tiny bit to test . Crucial to slather on the factor 50 every single day especially if you use any lightening products . At least with RP products you know they’ve been recommended by dermatologists .

I wish I was more techy 👩‍💻 as it would be great if we had some sort of page where we could write what products we’ve tried /used etc . Not to promote but just to give people ideas and potentially save us a fortune 😂. I feel like the queen of unused products sometimes!

Take care and sorry not to be of more help xx

Ps like krazykat 😻I use Dermol500 if skin is looking at risk of getting infected . Can be used as wash and moisturiser. I buy in boots

[Turquoise1999 in reply to Tiggywoos]

Hiii, Thanks for the recommendation of products and I agree there should be a platform where products can be recommend.

Yes I do feel my medication at the moment is not fully stable and I just need to find the right type and amount. I guess it’s just working through it

Best wishes.

[Tiggywoos]

Forgot to say😂Sally Hansen airbrush legs is a great spray to cover up scars marks etc on legs x